Tylalla

Hi Charlotte,

There are a lot of friendly and knowledgeable people here to answer your questions, talk when you need to, or just lend a shoulder to cry on.

I don't have any knowledge of small cell lung cancer., mine is non-small cell. Im sure someone here can help you out. I just wanted to say welcome!

Blessings,
Michelle

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Dear Kaly.

Im so sorry to hear your brothers condition has gotten worse. I do know the fight is hard and it can completely wear you out. As far as squamous cell and chemo, it can work. My first diagnosis was taken care of with Cisplatin and Etoposide, along with radiation. Im sorry his oncologist won't consider radiation, at least for pain control.

My prayers are with you both.

Blessings,
Michelle

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What great news Vicky! I hope it continues and you remain NED for years to come!

Blessings,
Michelle

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Hi Kaly,

Has he looked in to drinking some Ensure? It will provide needed nutrients. Its not bad when mixed with ice cream into a shake. The ice cream would also provide extra calories and nutrients. It might be easier swallowing a shake, and would help stop the weight loss.

Blessings,
Michelle

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Thats wonderful and great news! I'm so happy for you!

Blessings,
Michelle


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I've had both Opdivo and Keytruda. Opdivo first, which I really had no side effects with except neutropenia, which is a severe drop in white blood cells. I started getting a shot (Neulasta) and that took care of it. My oncologist made a wrong decision based on Foundation One gene testing and put me on Tarceva ( which was just horrid and another whole story on its own) I changed Oncologists and my treatment changed for the better.

Now, Keytruda. After my oncologist switch, I was tested for PDL-1 and found to be quite high in suppression. I don't remember the number, but I was put on Keytruda. Unfortunately it wasn't working for me and I am now in a clinical trial.

Side effects of both the Opdivo and Keytruda were very mild. Some nausea, some fatigue. That was really about it, with the exception of the neutropenia, which was controlled with a shot after each treatment.

I hope you have little to no side effects and whichever medication they choose for you works well!

Blessings,
Michelle

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Hello Dawn,

Tom's answer is spot on, and yes, we've all "been there". The waiting is almost worse than the cancer. Try and find some ways to take your mind off the waiting and enjoy some quality time with your dad.

Read, listen to music, try some puzzle books or take up a new hobby. Something to get your mind fixated on something other than the waiting.

I hope your dad fares well in his treatments, and you find some peace of mind.

Blessings,
Michelle


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I had my end of chemo scans done yesterday and was getting the results next Wednesday but went to my gp to get some scripts and he had a copy of my results so IM CANCER FREE ....i was so happy i was crying walking around the supermarket trying to text my kids through watery eyes ...
 
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Michele,
Wow, break a chop stick to stop the bad news of cancer raining on your family. 
Let's start with you. From my recollection of your diagnosis and surgery, you have every reason to believe you are NED - no evidence of disease. Likely the little back pain results from scanziety and I know of no cure for that problem. 
How was your husband's shadow discovered? X-ray?  Has he had a bad chest cold? I am really hoping these are the cause. One lung cancer survivor in the family is more than enough. 
Now you are dealing with your brother's diagnosis. The old adage is bad luck comes from three bad events. But I'm betting you'll have a NED scan, so break that chop stick and stop the mayhem at two!
And, yes, by all means, stay the course. 
Tom

Hi Betsy,

Well on your tired days just pamper and baby yourself. You've earned it. And on the other days, celebrate but still be kind to your self. On your good days, celebrate by going and getting a milkshake. Everyone loves ice cream right? I hope you continue to improve and have more good days than tired days.

Blessings,
Michelle


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New doctors!

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Hi Lbelle78,
I have had Opdivo's twin, Keytruda for melanoma.  I was on it for almost 2 years and watched my tumors shrink away (that was pretty cool!).  Unfortunately my LC doesn't respond to PDL-1 (or Keytruda would have killed it off in the melanoma war).  But I digress...
I had a fairly easy time with Keytruda.  I was a little tired and achy (flu like symptoms) a day or two after the infusion.  Sometimes I had a headache, and my joints would hurt.  But after a few days I was back to my regular normal self.  I was able to work and if I timed it right, travel.  
The thing I learned pretty quickly is to report everything that was out of normal for me to the nurse. They were  a wealth of information and help in dealing with the treatment.  The other thing I learned is that it takes immunotherapy drugs a little while to work and it's possible that you will see pseudo-progression, that it it looks like your tumors are getting bigger rather than shrinking - that's your body at work killing those suckers! - before the tumors start to melt.  Be patient with the patient is what I've heard.  So prepare yourself for the long game, and not necessarily the short game.  
In melanoma land, I have melahomies that did not respond to a PDL-1 drug (Opdivo or Keytruda) until months after they stopped the drug.  But they've had complete response.  May you too have a complete response with minimal side effects.
Hoping Opdivo kicks your LC to the curb!
Shalom,
Julie

My radiation was given to a tumor on my lung. The tumor was inoperable. I had radiation 5 days a week for 6 weeks. I developed a "sunburn" type burn on my chest and my back, I also developed a burn on my esophagus and it was extremely painful to swallow for several weeks. That's when cold watermelon, cold applesauce, and popscicles became my diet.

It wasn't terrible for me, and everything healed within a few weeks after radiation ended.

Radiation is a lot more advanced than it used to be. I was marked so I could be put in the exact same position each time. The machine rotated around me, and was set to pinpoint accuracy so it would only radiate the tumor.

Each visit was only 20 to 30 minutes long. The radiation was a lot kinder to me than chemo ever was!

Blessings,
Michelle


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i agree with Michelle about listening to your body and resting when you need  to; also about Look Good, Feel Better. I had chemo/radiation for a different (non-lung) cancer. My digestive system was seriously affected. Yours should not be as bad since they aren't radiating that part of your body You may well have some digestive issues and will need to experiment to see wha your digestion will tolerate. (mine took no-fat, no fiber, no dairy--very boring!) Other than digestion, I functioned pretty well and drove myself to my appointments. I was a little tired at times but didn't experience the extreme fatigue that some have. I did have neutropenia. If you have any fever, treat it as a medical emergency and if you can't get hold of your doctor immeciately, go to the ER. With low neutrophils, your body can become overwhelmed with infection in hours.
I'm not much of a make-up wearer, but still found Look Good Feel Better to be entertaining. I love freebies! I'm always on the lookout for free stuff or events for people wiht cancer. Might as well get something out of it!
Best of luck to you with your chemo-beamo.

With my first diagnosis, I had chemo and radiation together. The chemo will make you tired. The radiation will add to that and make you feel wiped out. Pamper yourself, rest, relax, sleep when you need to. See if your cancer center participates in the Look Good, Feel Better event, sponsored by the American Cancer Society. This is from their site:

In a Look Good Feel Better session, trained volunteer cosmetologists teach women with cancer how to cope with skin changes and hair loss using cosmetics and skin care products donated by the cosmetic industry. or PBA a national organization that represents hairstylists wig experts estheticians makeup artists... which includes A detailed description and demonstration of the 12 step skin care and makeup program... Detailed skin care information How to makeup tips Wig information Pointers on head coverings etc.

You can read more about it here:
https://www.cancer.org/treatment/support-programs-and-services/look-good-feel-better.html

It's a nice way to spend a couple hours, learn how to feel good about yourself again, and you get some free makeup!

My biggest advice is to just listen to your body and rest when you need to, cry if you want to, and never lose your faith.

Blessings,
Michelle

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With my first diagnosis, I had chemo and radiation together. The chemo will make you tired. The radiation will add to that and make you feel wiped out. Pamper yourself, rest, relax, sleep when you need to. See if your cancer center participates in the Look Good, Feel Better event, sponsored by the American Cancer Society. This is from their site:

In a Look Good Feel Better session, trained volunteer cosmetologists teach women with cancer how to cope with skin changes and hair loss using cosmetics and skin care products donated by the cosmetic industry. or PBA a national organization that represents hairstylists wig experts estheticians makeup artists... which includes A detailed description and demonstration of the 12 step skin care and makeup program... Detailed skin care information How to makeup tips Wig information Pointers on head coverings etc.

You can read more about it here:
https://www.cancer.org/treatment/support-programs-and-services/look-good-feel-better.html

It's a nice way to spend a couple hours, learn how to feel good about yourself again, and you get some free makeup!

My biggest advice is to just listen to your body and rest when you need to, cry if you want to, and never lose your faith.

Blessings,
Michelle

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With my first diagnosis, I had chemo and radiation together. The chemo will make you tired. The radiation will add to that and make you feel wiped out. Pamper yourself, rest, relax, sleep when you need to. See if your cancer center participates in the Look Good, Feel Better event, sponsored by the American Cancer Society. This is from their site:

In a Look Good Feel Better session, trained volunteer cosmetologists teach women with cancer how to cope with skin changes and hair loss using cosmetics and skin care products donated by the cosmetic industry. or PBA a national organization that represents hairstylists wig experts estheticians makeup artists... which includes A detailed description and demonstration of the 12 step skin care and makeup program... Detailed skin care information How to makeup tips Wig information Pointers on head coverings etc.

You can read more about it here:
https://www.cancer.org/treatment/support-programs-and-services/look-good-feel-better.html

It's a nice way to spend a couple hours, learn how to feel good about yourself again, and you get some free makeup!

My biggest advice is to just listen to your body and rest when you need to, cry if you want to, and never lose your faith.

Blessings,
Michelle

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With my first diagnosis, I had chemo and radiation together. The chemo will make you tired. The radiation will add to that and make you feel wiped out. Pamper yourself, rest, relax, sleep when you need to. See if your cancer center participates in the Look Good, Feel Better event, sponsored by the American Cancer Society. This is from their site:

In a Look Good Feel Better session, trained volunteer cosmetologists teach women with cancer how to cope with skin changes and hair loss using cosmetics and skin care products donated by the cosmetic industry. or PBA a national organization that represents hairstylists wig experts estheticians makeup artists... which includes A detailed description and demonstration of the 12 step skin care and makeup program... Detailed skin care information How to makeup tips Wig information Pointers on head coverings etc.

You can read more about it here:
https://www.cancer.org/treatment/support-programs-and-services/look-good-feel-better.html

It's a nice way to spend a couple hours, learn how to feel good about yourself again, and you get some free makeup!

My biggest advice is to just listen to your body and rest when you need to, cry if you want to, and never lose your faith.

Blessings,
Michelle

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Hi Nichole,

I'm so sorry you are having to face this, especially at such young age. My heart goes out to you! Tom is right, you will find so much information here, and if you have a question don't be shy about asking! I don't know anything about your type of lung cancer or mutation, but I did get 4 treatments of Keytruda. The side effects for me were minimal, some fatigue, but unfortunately it didn't work for me. I hope it is successful for you!

Blessings,
Michelle


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Hi Nichole,

I'm so sorry you are having to face this, especially at such young age. My heart goes out to you! Tom is right, you will find so much information here, and if you have a question don't be shy about asking! I don't know anything about your type of lung cancer or mutation, but I did get 4 treatments of Keytruda. The side effects for me were minimal, some fatigue, but unfortunately it didn't work for me. I hope it is successful for you!

Blessings,
Michelle


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Good morning, Fred.  Sounds like you have an early diagnosis which is always a good thing.  Because surgery isn't an option, I presume you've moved on to or will be moving on to chemo and/or radiation?  How are you feeling?  If you have questions, ask away.  We've all been there!

Vicky,
I let cancer take over my life and wasted 3 years wallowing in doubt and despair. So, try hard not to repeat my mistake. 
I've learned my attitude towards treatments, outcomes and living is the only think I can control. 
Stay the course. 
Tom

Vicky,
Glad to hear you are progressing with your treatment.  With cancer, I think the biggest issue we have is a loss of control.  Our lives are dictated by scans and appointments and treatment, and recovering from it all.  I'm a control freak and it drives me crazy!  I have been able to let a lot go, and I'm making plans for trips and activities as if I didn't have that nasty cancer looming over my head.  It will always be your first thought in the morning and your last thought at night, but don't let it consume your thoughts in between.  Find something good in each day and enjoy each day. 
I understand your concern for your husband with his additional roles, but your priority right now is you.  You need to take care of yourself (eating, sleeping, resting, hydrating) in order to fight this.  Do you have any others who might be able to help you and your husband? Family? Friends?  I know it can be tough to lean on others and ask for help.  

Thank you for your kind word for you Lauren and Katie. And Katie, I like your friend's wisdom about "borrowing trouble", and I will definitely keep that thought in mind.

I'm on day 12 of the first 28 day cycle of the drug. 9 more days on the drug and I'm off for a week. I hope things continue to work out!

Blessings,
Michelle


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Hello. My name is Michelle and I am new to this forum. I am a 3 1/2 year survivor of non-small cell squamous cell lung cancer, and 1 year since recurrence at stage 4 with mets to my pelvic bone, spine, kidney, a couple lymph nodes, and 2 nodules in my lung again. I've been through chemo twice, radiation, surgery, Opdivo, Tarceva, and now getting ready to start Keytruda.
I take each day as it comes, thankful for another sunrise. I've lost my hair twice, (as well as my eyebrows and eyelashes), but I didn't let it get me down. I just learned how to crochet hats and waited for it to grow back! The side effects have been rough, and they have taken a lot out of me but with the help of a couple great caregivers (my husband and my son, and my puppy), I have managed.
I look forward to reading and sharing with others on the forum!
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